A few weeks ago, I saw my electrophysiologist, the brave and patient man (in my book that makes him a hero) who has taken me on as his first real POTS patient. Although I get along well with this doctor, for some reason I typically end up in tears in his office. Every time he sees me he must be anticipating the waterworks since he always has a fresh Kleenex box in hand upon entering the room. Sure, there have been a few extreme tachycardic episodes which he witnessed with his own eyes, the simultaneous sense of disappointment and relief I experienced upon finally hearing a legitimate diagnosis, and even the grieving openly to him about the emotional aspects of being sick and the wonderfully active and ambitious life I left behind. Those discussions all engendered tears easily. But at this last visit (my first visit with him in over 9 months!) for the first time I did not cry. And I was proud of myself. He could tell I was making progress. It's not like he is my shrink or anything, nor is it his job to be, but he is sensitive to the fact that I am dealing with something difficult and chronic with no quick fix or simple cure. His empathy is refreshing considering most doctors I have encountered don't even recognize the terms POTS or dysautonomia.
I ran through a checklist of questions, among which were routine items like a compression stocking prescription, a refill on my propanolol (taken as needed), and an update on my blood pressure readings. The first and most important item at the top of my list was to talk to him about getting a handicapped parking sticker, something I have been vehemently resisting until just recently. My mom convinced me to at least ask about it to see if it was a viable possibility for me, and of course she encouraged me to get one. My electrophysiologist agreed with her wholeheartedly, filled out the paperwork, and I had my sticker that afternoon. I'll admit, it has made life a little easier.
Whenever I attempt to go to the grocery store or even run a simple errand, I am often exhausted before the time I ever get inside. I realize that my body is operating like an hourglass, the blood is slowly running downward and I only have a limited amount of time to complete errands before all the blood will have left my brain and I will collapse in public. So needless to say I make lists and plan my strategies for errands very carefully so I can complete them as quickly as possible to avoid a potentially embarrassing incident in public. Perhaps it is because I passed out at my own college graduation, what is supposed to be one of the most important and defining moments in any young person's life, but I have an extreme fear of passing out in public again although it has only happened to me that one time. I think my fear of publicly passing out is mainly because I know someone would call 911, I would be forced to endure yet another harrowing and uncomfortable ambulance ride, and end up getting needlessly poked and prodded in the ER only for them to tell me they have never heard of POTS and to be sure to follow up with my doctor. Aside from getting a saline IV which usually makes me feel a little better temporarily, there are few perks to an Emergency Room trip. Usually the amount of blood they take for the tests is enough to drain me (literally) and leave me feeling more weak and symptomatic than I was in the first place.
And why they never let anyone eat anything in the emergency room is beyond me. I know I will not be needing an immediate surgery, and I also know that my body doesn't last much longer than about two hours without food. It was always a bit difficult to sneak bites of fast food while laying there and I always felt slightly guilty when a doctor or nurse asked what the smell was. But I know that not eating while I waited for hours on end for a response as to whether I could eat or not would only result in me feeling much, much worse. So I'll admit it, I have eaten several cheeseburgers in emergency rooms while waiting on test results. Admitting that feels like I am confessing some unspeakable sin, but at the same time, I'm not sorry, because my body was probably telling me to eat the cheeseburgers for a reason. Sneaking those cheeseburgers was about the worst thing I have done in my life thus far. But feeling that sick and that starving, at the time I didn't care that I was breaking the rules, and truly felt as if I might die if I didn't eat at that very moment.
Luckily I have managed to stay clear of emergency rooms all year, and it feels good. After having a recent string of bad days down in bed, I realize I am not out of the woods with this whole POTS saga yet. But the good news is I am down in bed much less than I used to be, and am much better than I was in the beginning. Maybe it is because I have discovered what triggers my symptoms, and I do my best to avoid those things (standing, extreme heat, going for too long without food or water). Or maybe it is because my autonomic nervous system is slowly recovering and normalizing. I can only hope that my progress is due to the latter.
In the meantime, it is my new found attitude that I am going to do everything in my power to lead a more 'normal' life. If that means using a handicapped parking sticker to achieve a better quality of life, then that is what I am going to do. If I am feeling faint in public, I am going to sit or lay down on the floor. I don't care if it isn't socially acceptable. I refuse to be embarrassed about it. I refuse to let people's stares bother me anymore. My next step, although I am stubborn and hate to admit that that I need help and can't always stand on my own two feet, is to take a trip to the grocery store and use a handicapped cart so I can actually enjoy my shopping experience for the first time in a few years. I may attach a sign to the front of the cart that says, "I faint." I get tired of explaining POTS to people who simply don't get it.
I think I have been in denial about being different for a long time. It's like I don't want to admit to anyone, even myself, that my body cannot do the things it used to. My body harshly reminded me this past weekend when I used my handicapped parking sticker to go to a classic car show. Because I wanted to go, and I thought I could handle it. And I would have never known if I didn't at least try. Silly me, I now know that it was a bad idea to even attempt such a thing especially on a hot day without renting a wheelchair. What was I thinking? The stubborn side of me was thinking, I don't want to have to be pushed around in a wheelchair all day when I have legs. I don't want people staring at me. And, most importantly, I don't want to give in to this illness. If I start using a wheelchair, or becoming too reliant on my handicapped parking sticker, then POTS has won and gotten the best of me. And I don't ever want to let it win. At least not without a good fight. Then it hit me, that I am only making this whole experience harder on myself by not listening to my body. And if I don't listen to my body, and try to accommodate it at least a little bit, then POTS is winning anyway because I am allowing the symptoms to dictate what I can and can't do in life.
Not anymore though. Although it sounds cheesy, I am going to start embracing the fact that my body is fragile. I am going to treat it with even more respect than I already do. I am going to nourish it properly by eating a better diet with more whole foods. I am going to go for regular massages. I am going to find an exercise regime that works and adhere to it. I am going to try my hardest not to compare myself to my "normal" peers and what they are doing anymore. That only makes me feel inadequate and reminds me of all the things I am missing out on. I am going to adopt a new attitude of positivity and be thankful for the things I have accomplished in life and the wonderful friends I have gained through POTS who are all sharing in this difficult struggle.
